Roadmap Information & Support Resources
Use the information and support resources provided to help with taking the next steps beyond receiving a rare diagnosis or continuing life without a diagnosis.
Rare diagnosis
After the journey to find an answer, receiving a rare diagnosis can be a time of mixed feelings and more questions. Although information and support specific to the diagnosis is often limited, general resources can help with many aspects of daily life as well as next steps beyond the search [...]
View the roadmapNo diagnosis
Many children and adults remain without a diagnosis despite multiple assessments and investigations. General resources can help with many aspects of daily life as well as taking steps forward, even without an identified cause for signs/symptoms [...]
View the roadmapCriteria for resource selection
The credibility and relevance of each resource is verified based on the following criteria:
- multiple author + clearly identified parent organization (e.g. who we are/our team)
- appropriate advisory board/committee
- current resource with identifiable review date
- easy read, appropriate language
- broadly applicable to stakeholders from diverse backgrounds